Autistic ds - I'm so desperate...

[helplessandworried]

Posting for traffic after a horrible sleepless night...

DS is 19 months old and has been more or less diagnosed as autistic. The red flags have been there all along, but I happily ignored them until it was no longer possible: just fleeting eye contact, no words, no imaginative play, no interest in other children, no imitation whatsoever.
I'm extremely scared of the future, of the life he might lead and the impact it might have on dd and my husband who is already struggling with depression. There are so many questions noone can answer: Will ds ever learn to talk? Will he ever have friends, use the toilet, hug us, have a job? Will he have any feelings for us at all? Will we be able to cope? Will he have violent outbursts and hurt his sister? Will he decline and stop smiling at us which he does sometimes? Will he be happy? Will we ever be happy again? I'm so sad.

Please tell me everything will work out somehow... Please....

Thanks again to all of you. I'm still feeling really low but you've all helped me getting through the day. You are all truly amazing!

My DS was diagnosed at 2. He had no speech, no eye contact, no attachment to us. He played with doors constantly, no imaginative play. He also has moderate learning disabilities.

He started school (special school) non-verbal and in nappies. And then when he was 5 he started talking - the first time he said "Mum" I cried! He was toilet trained at 5.5.

He's 13 now, still in special school, his learning is around year 2 level (so age 7/8) but he loves learning, he's learned to swim, ride a bike, cook etc.

And he never stops talking! He's very repetitive so it does get tiring sometimes, when I'm asked a question for the 50th time that day. But at least now he can tell me what he needs, wants, what he's done. He does sometimes have trouble verbalising if he's upset - I give him my phone and he will sometimes type in what's wrong.

He doesn't really have friends, he's not interested. He talks to children to school and is happy to work alongside them, but not in socialising.

His school is absolutely brilliant, he has definitely been in the right place for him, and I think that's why he's done so well - he adores school, and has done right from the school. We are lucky to have such an amazing special school here.

OP maybe you are grieving for the child you imagined you would have?
Try not to assume you have depression caused by DS and his condition.
Autism is a scarey, widely varying world. Please access support groups in your area then you will meet some wonderful children and families with autism and feel less afraid of the future.

My ds was dx at 3 with sever learning difficulties and autism, he was non verbal and in nappies. He is now 7 and his speech is improving and he is dry during the day - he now asks to use the toilet, something I never though would happen!!! He is very loving and gentle most of the time but can be challenging and very willful. I do worry about the future as he is likely to always need to support but I try to focus on what he can do rather than what he can't and he is in a fantastic school that trys to ensure each child reaches their potential.
Early intervention makes such a difference, read as much as you can, pick up information and advice from other parents and remember that no two children with autism are the same!

cestlavielife, hi what is the app called that your son uses on the ipad as i feel this would benefit a child at my school, as he loves the ipad and is currently communicating through the pecs system, he is in a mainstream school with a 1:1 until a place becomes available for him in the local special needs school

It might be Proloquo2go, that's what my ds uses. Well he does at school, very well, but is more reluctant at home where he prefers Makaton.

I will say you have to get a lot tougher and start taking no for an answer.

funding is a nightmare to get. the dirty looks when a 9 year old is having a tantrum in the supermarket ect.

DS will be fixated on 1 thing at the time. seriously he know every thing about dinosaurs. the height weight name ect ect.

you sound a fantastic mother.

I am not a fan of PEC cards, it really confused DS as the pictures on the cards did not match real life ( for him)

Hi my DS was dxd at 28 months but I knew from 14 months. He is now 11 and a half. It has been the saddest, hardest journey of my otherwise charmed life but he has taught me and my DH so much and we are head over heels in love with him, his joy and innocence are precious gifts. His first words started at 3, by 4 he had about 20 words, by 5 he had 50, by 6 he had 100 words, at 7 he started to put two words together, by 8 he started to add some verbs, by 9 he became aware of tomorrow, today, by 10 yesterday,1oclock etc and was beginning to formulate sentences of 3-5 words, at 11 he is attempting to read simple words... It is a slow, heartbreaking journey at times but it can be moments of pure bliss and joy too. Good luck! Xxxx

Gridplayer is a good free AAC app.my DS loves it

My friends son is severely autistic, only says a few words, and rarely.

He has a great life, and a great relationship with his family, who he clearly loves dearly. He is a keen gardener and splits him time between growing veg and helping out cleaning in a charity shop. He has a lovely smile and is very kind.

Times have often been hard. Does he have the life his mum and dad dreamed of when he was born? No. But he is happy,his family is happy, they have found a path.

Just mentioning this to say that even if your son turns out to be more severely autistic it doesn't mean he won't have a good life.

My DS has a PDD-NOS diagnosis - he wasn't talking until 4 and still has a speech disorder which requires weekly speech therapy. On the social front, he's always been very engaging so when we were getting the tests done, the educational psychologists didn't think it was autism (although he displays some of those non-social behaviours when it comes to spinning, lining up toys etc).

Our number one tip would be to get him as much therapy as you can in the early years. My biggest regret is we put off having DS diagnosed until he was 3.5 ..a diagnosis at 2 (when we really started noticing problems but everyone brushed it off saying boys are slower) and therapy from that point could really have made a huge difference.

It's still a worry of course but I want to encourage him in the things he is good at (construction) and not make him worried about me wanting him to pursue a career with skills he is always going to struggle with.

I agree with piper my daughter is not into visual aids

I work with an autistic child. Before I started I tried to read up as much as I could about autism and it was all very clinical.

I started googling message boards for people with autism and it was such an eye opener for me. I'm alway flabbergasted when someone on r/autism is posting away and casually drops into a post that they are non-verbal. The Internet can be such a leveller in that regard because that is invisible to me. Non-verbal does not mean unable to communicate, it's just one avenue of communication that's cut off.

I noticed that someone said unthread that their child loved to be wrapped in a blanket. If you haven't already, look up weighed blankets. It's a huge sensory thing for people with autism and brings huge comfort.
One of the most important tips I learned was that stimming isn't a bad thing and helps people with autism to process things. It made a huge difference to the relationship I have with the child as they are more relaxed and trusting when they know they can just stim if they need to.

Sorry, it's late at night and that probably all came out as very disjointed.